An appeal has been launched to help an 11-year-old girl with a rare illness to access pioneering treatment which may slow the progress of the disease that so sadly claimed the life of her big brother.
Gracie is the daughter of Sarah Coates, part-time Ministry Assistant in the Parish of St Peter and St James, Belfast, and her husband Greg.
Gracie suffers from a rare and life-limiting neurological condition called Vanishing White Matter Disease. Worldwide, there are less than 300 known cases, with life expectancy only up to teenage years.
Devastatingly, in July 2019, Gracie’s brother Noah passed away aged 12 from the same condition.
Over the years, Noah and Gracie have needed to go to Holland for specialist treatment. A world-renowned paediatric neurologist has been working tirelessly to find a cure for all children suffering from this disease.
This year, the team in Holland began the first clinical trial of its kind in the world, having discovered a drug which may help to slow the progression of the disease.
Gracie has the opportunity to go to Holland this autumn to see if she meets the criteria to participate in the trial. She and her mum and dad may need to stay in Holland for up to eight weeks.
Friends have launched an appeal to raise funds to help Sarah and Greg with the expenses of travel, accommodation, and everyday necessities as they live in Holland for nearly two months.
“We will need to be in Holland for six to eight weeks, and will have to take leave from our jobs,” said Sarah, who also works with Safe Families UK, a Christian organisation which has recently moved into Northern Ireland. “We are so thankful, it will ease a lot of the stress of being away from home, and allow us to be with Gracie.
“The team will do all their own medical tests before starting her on the trial if she is suitable. We won’t know the impact until after the full four-year trial, but we are very excited for her.”
Sarah said that Noah had been diagnosed with Vanishing White Matter Disease when he was three-years-old. At the time she was pregnant with Gracie. As Noah was the only child in Northern Ireland with this illness, the family was sent to Holland for treatment. Gracie was diagnosed a year after her birth. The family have been back and forward to Holland many times over the years.
“Gracie has the same strain as Noah and it is life-limiting, but Noah’s was more aggressive,” Sarah explained. “He had such amazing faith which is only God-given.”
Sarah’s words on Noah and Gracie’s dedicated Facebook page at the time of Noah’s death reflect Noah’s deep faith. “He is our greatest gift from God and was filled with grace, love and compassion,” Sarah wrote. “He loved God with all his heart and is now running, jumping and dancing before the Lord, filled with praise for his Saviour.”
Sarah regularly shares points for prayer on the online page. “God has helped so much,” she said.
“Gracie has lots of things in place to keep her safe. She cannot have the same life as any other child her age. She has one-to-one help in school, and goes to the hospice for respite.”
Sarah added: “As Gracie goes through tests for another genetic condition here at home, we need lots of prayers.”
Donations to support Gracie and her family’s stay in Holland can be made via GoFundMe and are also being received through St Peter’s Church, Antrim Road.